OpenHealth Q&A

Unraveling Livedoid Vasculopathy in a 36-Year-Old Post-Covid Case

I appreciate your patience as I share my intricate health journey; it has been a perplexing five years. In March 2020, I contracted a severe case of COVID-19 while in New York City. Following this, I faced an array of persistent issues: a continuous mild fever, rashes, fatigue, gastrointestinal disturbances, and cognitive challenges that lingered for an entire year. At one point, I required emergency care due to low potassium levels. Imaging during that period indicated nodules and a mosaic pattern in lung function on a CT scan, although the source remained uncertain. Additionally, a brain MRI revealed a small white matter hyperintensity, which was thought by the radiologist to be autoimmune in origin. An immunologist was brought in, suspecting mast cell activation syndrome (MCAS). Despite my normal tryptase levels, antihistamines were prescribed, leading to significant alleviation of my more severe symptoms. During this challenging time, I developed an ankle lesion that was overlooked initially. Over the ensuing years, I experienced milder symptoms marked by sporadic significant "flares" typically triggered by minor viruses or routine vaccinations. One such incident occurred after my third COVID booster in 2021, leading to fever and joint pain. By 2023, I encountered a serious serum sickness-like reaction to doxycycline. As my treatment with the immunologist progressed, I started low-dose naltrexone (up to 4.5 mg daily), which notably improved my fatigue and cognitive clarity. In early 2024, a biopsy was performed on the previously concerning ankle lesion, diagnosing it as livedoid vasculopathy. The findings suggested the presence of fibrin thrombi, aligning with this condition; however, it noted the potential for other similar vascular issues. Subsequently, a battery of tests ensued: my bloodwork was relatively standard, presenting minor anemia but nothing particularly alarming. There was an increase in clotting factors, prompting a baby aspirin prescription. An extensive evaluation by a rheumatologist showed mostly normal results, save for one ambiguous finding—an elevated serine protease 3 IgG—yet I was reassured that it was not indicative of a systemic issue. After receiving a routine TDAP vaccination, I once again experienced a serum sickness-like response just days later, requiring me to use steroids. Remarkably, during this period on prednisone, I felt a brief return to my pre-COVID vitality. Shortly after, I consulted a new local immunologist due to my relocation. He expressed skepticism regarding the MCAS diagnosis, based on my test outcomes and the delayed nature of my reactions but advised me to continue antihistamines since ceasing them resulted in the return of the low-grade fever. Upon testing penicillin, I again experienced a flare resembling serum sickness. This recurrent hypersensitivity across numerous triggers feels peculiar—is this a common occurrence? I have been eager to receive vaccinations, despite these challenges. As fatigue persisted, I was directed to neuro physical therapy, where they identified a specific visual motion deficit typically observed in individuals who endured severe COVID-19 infections, attributed to neuroinflammation, though the exact cause remains unclear. Through my own research—bearing in mind that I’m not a healthcare professional, but I operate within clinical science—I discovered that my flare-ups might correlate with type IV hypersensitivity reactions, potentially leading to granulomatous inflammation. Although livedoid vasculopathy itself doesn't exhibit granulomatous features, I can't help but ponder whether there might be a link. Considering my lung imaging results, I even wonder if I’m experiencing a rare manifestation of sarcoidosis. This may seem far-fetched, but I have concerns regarding lupus due to familial predispositions (as detailed below), yet my ANA test was negative, and other specific lupus tests were also unremarkable. My mother displayed the classic lupus rash, which I do not have. I’m contemplating seeking a second opinion from a rheumatologist and returning to dermatology to address the persistent lesion—though it's improved with aspirin, it remains. Current medications include escitalopram 10 mg, levocetirizine 5 mg, hydroxyzine as needed, and baby aspirin 10 mg. Additionally, I've found some relief from fatigue using NAC (up to 1200 mg) and trying various supplements, which appear helpful, such as quercetin, bromelain, melatonin (3 mg), CoQ10, and magnesium threonate. To summarize, I'm struggling with unusual inflammatory episodes that are mitigated by antihistamines but continue to face lingering fatigue and cognitive fog. The biopsy revealing livedoid vasculopathy has led to numerous referrals, yet experts remain uncertain about the underlying cause. I would deeply appreciate any insights—my goal is to reclaim my previous active lifestyle and mental acuity! **Medical history:** Diagnosed with Ehlers-Danlos Syndrome in 2013, with MYH11 and COL5A2 mutations. I have experienced Raynaud's phenomenon and occasional livedo reticularis since childhood. My primary concern relating to EDS is arthritis, which is manageable with physical therapy. **Family background:** My mother also has EDS and lupus, while my sister is affected by EDS. My father has type 2 diabetes and heart disease.

Answers (1)

9/7/2025, 5:50:42 AM

OpenHealth AI

Main Points: You have a complex post-COVID health history that includes chronic inflammation and livedoid vasculopathy, alongside a range of symptoms including fatigue, cognitive fog, and recurring hypersensitivity reactions. Your goals include understanding these health challenges and regaining your previous active lifestyle.

Explanation: Your experiences are understandably distressing, especially considering your background with Ehlers-Danlos Syndrome (EDS) and family history of autoimmune conditions. Livedoid vasculopathy can be linked to various underlying conditions, including autoimmune disorders, which might explain your reactions and the complex interplay of symptoms you continue to experience post-COVID. The connection between your vaccination responses, allergies, and inflammation suggests a hypersensitivity spectrum that could indeed involve immunological factors.

It's important to acknowledge that chronic fatigue and cognitive symptoms are not uncommon in the aftermath of COVID-19, known as Long COVID or post-viral syndrome. Your strategy of using antihistamines and exploring immunomodulatory treatments like low-dose naltrexone may be beneficial, but ongoing symptom management and close monitoring are crucial.

Next Steps:

1. Monitor Symptoms: Keep a comprehensive diary of your symptoms, including triggers, severity, and response to medications. This detail can be invaluable for healthcare providers in tailoring your treatment.

2. Consult a Specialist: It may be beneficial to seek a second opinion from a rheumatologist, particularly one who specializes in post-COVID conditions or connective tissue disorders. They can provide further insight into your livedoid vasculopathy and help rule out overlapping autoimmune conditions.

3. Focus on Anti-Inflammatory Strategies: Continue with your current anti-inflammatory supplements (NAC, CoQ10, etc.), but consult a healthcare professional about their long-term usage and possible interactions with your prescriptions. This might also include dietary adjustments focusing on anti-inflammatory foods.

4. Strengthen Pain Management: Engage with your neuro-physical therapist to further address visual motion deficits and fatigue. This combined approach, with therapies tailored to post-viral and EDS-related symptoms, might improve your quality of life.

5. Gradual Vaccination Strategy: If future vaccinations are essential, consider working with your healthcare provider to develop a pre- and post-vaccination care plan to monitor and manage potential reactions.

6. Stay Educated and Engaged: Continue researching your condition while maintaining open communication with healthcare professionals, allowing for informed discussions about your treatment options.

Your journey is challenging, but incremental improvements in your management plan can help in navigating your recovery and reclaiming your previous vitality. Please don't hesitate to reach out for continued guidance or support as you progress.